Chloe - three years later. Special day - October 8, 2012

Sisters laughing on Chloe's special day - October 8, 2012

Today we celebrate Chloe and her fight over the past three years.  She is a big girl these days and yet still such a baby.  She has overcome so much but still has so many obstacles to tackle.  She has shown such enormous strength, yet her body is still so weak.  Her spirit and her fight, though, have always shined through. 

It is still so difficult to recount the events of what happened when Chloe first got sick or what we have gone through over this time.  There are still moments of anger, resentment, frustration, confusion, and defeat.  Many of these moments are still filled with pain and sadness.  It is still painful to look at pictures of Chloe before she got sick and remember those moments.  Your heart just aches and it becomes too much to bear still.  We still ask the same question over and over… ‘Why?’ There is never an answer. 

Olivia has been asking about her sister more these past few months.  She asks about what happened and tries to make more sense of what it means when your brain is hurt.  She asks for more explicit details on what it meant for Chloe when she got sick.  Ultimately, though, she asks when Chloe is coming home or she simply and very quietly says, “I miss my sister.”  An unbearable pain in my heart always seems to swell when I hear her ask for Chloe and all I can do is take a deep breath and say that I miss her too.  Olivia is lost without her best friend.  Any time she has the opportunity to make a wish as she blows out a candle, throws a penny into a fountain, or looks up at the first star in the sky, she will always wish for her sister to come home or for her family to be and live together forever.  It is so sweet and innocent when she does this and makes me appreciate their bond so much more. 

We miss Chloe everyday.  The pain we felt three years ago has never gone away but we try we move forward each day a little bit more.  We look forward to seeing Chloe grow and face new challenges everyday.  There still has not been much progress in terms of her development of physical strength but she has shown us time and time again how much strength is still alive inside her.  Her affect has calmed a bit over the past few months and she does not cry out as often.  She is still heavily medicated for her seizure disorder but we see fewer clusters.  And, best of all, when we visit her and hold her close she will laugh and smile.  It does not happen each time but when it does, it fills our hearts with such joy.  She knows she is loved, always has and always will be.  She knows when she is surrounded by those who love and support her every step of her hard journey.  She has not forgotten who we are nor will we ever let her.  She is truly amazing!

These past 6 or 7 months have been a huge adjustment for our family.  We juggle so much every week and weekend to make sure we create a home life both here and at Sunshine.  One thing I’ve learned from Chloe, though, is that you can never give up.  She has fought her way through life and continues to do so everyday and I must follow her example.  As hard as it is, Reth and I make it work so that we we try everyday to enjoy our marriage, enjoy our children, and enjoy our dreams.  It is not easy, it never has been – there are always tears, there are always arguments, there are always hardships that we endure.  Chloe has taught us so much about love, patience and strength.  She inspires us everyday to do more, to be better, to be more loving, and to be more kind.  I miss having her next to me everyday, I miss seeing Olivia run to her sister after school to shower her with kisses, I miss watching Reth dancing with his baby girl before bedtime and I know I will be crying for her the day her baby brother comes. 

She is an amazing girl who is very much loved in every possible way and for that we celebrate her today and always.  Thank you Chloe for all that you have given daddy, Olivia and me.  You are an incredible daughter and are such a gift to daddy and me.  Olivia adores you and will protect you always.  You will always be her best friend.  And, we can’t wait for you to be a big sister.  You will teach your brother how to be sweet yet strong, stubborn yet loving and all from being just the way you are. 

We love you Chloe!  Even though you are sometimes so far away, you are always in our hearts. 

October 7, 2012

When will it ever end or when will enough ever be enough?!  We try to make sense of all that she has suffered and all that she continues to endure and we feel like no one ever hears our plea to make it stop, to let her enjoy what life she has, to allow us to move forward and feel happy.  It seems whatever forces working against her and our family only seem to seize for brief moments of time until another wave comes and beats us down.  She proves her strength, we pick up the pieces and regain strength to only have another blow knock us down.  Yes, she is better but it depletes us each time there is a setback, and there have been many. 

We just recently found out that Chloe’s immune system is somewhat deficient and we are working with an immunologist to find out how to boost the antibodies that her body lacks.  While in Cornell early September, it was advised by her team that we run further bloodwork to investigate the reason why Chloe has now had two serious blood infections.  It turns out that she has very little to no antibodies for three viruses that each child is vaccinated – Dtap, HIB and meningitis.  Upon these findings, we immediately re-administered her vaccinations and hope that this will jump start her system and start to produce the antibodies she desperately needs.  We are unsure if she ever produced these antibodies or if this was the reason why she was infected with bacterial meningitis.  Babies are protected for the first 5 or 6 months from the antibodies received through the placenta via the mother.  After this period, it is up to the individual’s body to produce its own protection.  In Chloe’s case, we are unsure her body ever provided her the protection she needed.

Finding out this news was helpful in giving us some answers but was obviously devastating at the same time.  As a parent, you do everything you can to protect your child – you follow your instincts, you read books, you follow doctor recommendations.  We vaccinated her, we brought her to well baby visits, we read and researched (too) many baby books and still we could not protect her completely.  Part of my heart ached knowing that I only nursed Chloe for a month and I felt that immediate sense of guilt rushing back.  There were circumstances that prevented me from nursing longer but if I had, would she have been more protected?  Guilt is the worse thing any parent can have in situations of having a sick child so this made me ill. 

It is still hard to completely accept that fact that there was nothing we could have done to foresee any of Chloe’s suffering.  This is why it is so hard when people, even ones closest to us, continue to say things like – ‘why did this happen, why didn’t you bring her to the doctor, didn’t you see it coming?’  I know there are people out there who think, ‘how could they not have known? or how could they not have done more? or why did it take it so long for them to see? or why don’t these parents fight more, pray more, do more, work harder?’ I see some people look at me with their pity and it makes my blood boil.  We would do ANYTHING for our girls and the new baby. We have suffered and sacrificed so much than we could ever explain to others.  Many of you support us and hear us when we share our cries and we are grateful for those who understand and sympathize, not pity.  You will never know the value of those moments of sympathy and empathy you genuinely share with us and that’s what makes us fight even harder.

Tomorrow we will celebrate Chloe’s three year mark of surviving her meningitis.  We had a quiet and peaceful weekend planned so that Chloe would come home and we could enjoy some real family time at home.  Unfortunately, we once again had a delay in our plan.  I sobbed yesterday as I ran out of Chloe’s room in Sunshine and fell into a chair, screaming one word, “Enough!”  Reth, Olivia and I had driven to Ossining with such high hopes to bring Chloe home.  There haven’t been many visits home this summer or even for Olivia’s bday because Chloe was sick or was exposed to and potentially carried germs of other viruses from the hospital children.  This would have been her first visit home in a long time and we were ecstatic, especially Olivia.  As we packed her bags, we found out that she had been started on another antibiotic this past Thursday that we had not yet been told about.  Apparently, one of her caregivers had woken up ill, and after an ER visit received a positive result for strep.  With Chloe’s immune system already compromised, she was immediately put on an antibiotic prophylactically.  As we prepared to leave, a nurse urgently came into her room telling me to put on a gown and mask and escort Olivia away from her sister as the final results of a throat culture came back positive for Group A Strep. 

Pushing my way past the nurses, I left the room with devastation.  Explicit directions were given that extra precautions needed to be taken around Chloe until we figured out how to improve her immune system, so why would they let someone who works with 20+ children in the hospital be in direct contact with her?  We don’t want Chloe to live in a bubble and be on contact isolation forever but until we have more answers, people who feel even the slightest compromise in their own health should not be taking care of her and spreading their germs.  Almost 8 months pregnant and having Olivia at risk was not an option and we decided to let her finish 48 hours of antibiotics before trying to take her home so we left with tears, frustration and defeat. 

What will it take for us to have some sort of normalcy?  Is it so wrong that we want her to be as healthy as she can be at this point?  Hasn’t she been put through enough? Is it selfish that I want my family to move forward and be able to enjoy life? When… when will I ever feel that our life is somewhat back on track? After Chloe got sick, we knew our life would never return to the way that it was and we expected a long road and have dealt with those ups and downs but why can’t we also have time to enjoy?  I don’t mean to make it sound like everything has been so bad but times have been difficult.  There’s no sense in complaining about it when people ask so we sugarcoat and work it out but of course, there are days and months that are just a mess!! 

In reality, many of our dreams have been put on hold – our careers, our dream home, our adventures.  It’s not easy realizing that your life somewhat stopped when a devastating experience happened, but ours did.  Like I said, we’ve picked up pieces and regained strength time and time again but the effects are forever in our hearts and impact our everyday life, along with our hopes and dreams.  Everything and everyone else moved forward after October 2009 but we have, in many ways, felt stuck.  Even with the upcoming excitement of a new baby, a new life and love coming into our lives, it is still difficult.  Making room for baby#3 brings a sense of moving forward and a great feeling of love and strength but it is scary and emotional.  Creating a place where Chloe used to sleep, emptying her drawers to make room for her brother’s things, unpacking her old stroller where she last sat and had her last smiling picture three days before she fell ill, the toys that she never relearned to use, the books she never reached out for again, the seat where she would playfully beg for more and more food, the swing where she last sat before rushing her to the ER three years ago and where she last smiled. Of course there are new things we bought for the baby and we will make new memories, happy ones for sure, but we can never forget or push aside what has happened.

There will always be a place in our apartment for Chloe to come home.  She will always be there and with us regardless of the fact that she sleeps and is cared for in another home.  She is the reason why we know how to love so much, and she taught me to be the mother that I have become.  She is the one who inspires us and gives us strength to move forward everyday.  She is why we have learned to fight so hard, to advocate and use our voices.  She is never far from our hearts, our minds, our beings.

Tonight, Chloe and Olivia will have their long awaited sleepover and it will be joyous.  Tomorrow we will have our family day and enjoy.  We will not think about her sufferings but celebrate her fight.  It took us awhile to get her out today but Reth just carried her to the car as she winced as the cool autumn air touched her face and smiled as we pulled away from her nursing home.  I finish this blog as we drive home with her in her car seat, kicking the back of my chair, happily sucking on her finger and sitting next to her sister.  The way it should be…

Much love,

Michelle, Rethier, Olivia and Chloe